Thanks for mentioning that- another dizzy actually suggested it to me too. To be honest, it was really hard to read because I think her Dr. didn’t treat her problems correctly- I know he was controversial in his fistula treatment. I think he wasted years of her life with bedrest, and I think he also missed a pretty obvious diagnosis of migraine. The author never recovered- she states that she still struggles with hydrops (not sure how that relates to migraine though)- but she also says she has BPPV that didn’t respond to treatment, MDDS, and “crowd motion sensitivity”- I think she clearly also has migraine based on these symptoms, but was just never treated for it- I think she probably could have felt a whole lot better if she had. Honestly though, that was probably the most depressing book I have ever read- for someone who has a fistula, that book was basically saying you will never recover so just accept it. I actually was so upset by it that I threw it in the trash!!! I just feel sorry for her that her dr. wasted her time, and also it sounded like she never got a second opinion either which really cost her a lot of time and quality of life.
Yes I did wonder if she had MAV, especially because at one point she describes an ocular migraine, just like the ones I get. It never seems to have been suggested to her she might. I found it useful reading for me just because it gave a really good insight into someone with all these weird vestibular problems and how they affect your life and also how she dealt with it mentally. It made me feel less of a freak knowing that other people felt some of the same things and I was glad that at least someone had written a book on something which seems so little known about in the public domain. From that point of view I really valued reading it.
I did find it strange how she had so many vestibular disorders going on at once and I think she could definitely benefited from trying a migraine preventative. I believe that the author is now on the Board of Directors for VEDA so maybe she has found some further relief for her problems. It would be interesting to hear how she is now…
I agree I would love to hear how she is doing now. I also thought it was strange (and improbable) that she could have 5 or 6 different disorders- I wonder if she ever did get another opinion, especially since I think her Dr. (Black) died recently. I honestly feel sorry for her because I think if she had gone to another Dr. originally, maybe she could have gotten surgery sooner and also been put on migraine meds. I think her fistulas probably never DID heal, as her dr. found at surgery that she had some kind of congenital issue that made them pretty much impossible to heal on their own.
I also thought it was really interesting how this all happened after the author flew with a bad cold. I think it is amazing and great that the author never seemed to blame herself for what happened. The only reason I say this is because I had a similar situation that started my problems (a barotrauma), and I struggle endlessly with blaming and torturing myself for what happened. If she ever blamed herself for the whole mess, she never said it in the book, and I really admire and envy her for that.